Elaine

I met Elaine four years ago. Although her home attendant had to push her wheelchair into the room, Elaine cheerfully asserted her control over the visit. Her smile beamed as she greeted me with a warm “Here I am!” I soon learned it was her trademark greeting. I also noted that it was a very nonspecific salutation. The reason: she didn’t know where “here” really was.

Elaine suffered from Alzheimer’s disease. By the time I met her, the disease had already begun to cripple her both physically and mentally. Like all Alzheimer patients, she had lost her ability to formulate short-term memories. She could tell me adorable stories about her childhood. But she could not remember any of her prior day’s activities. I enjoyed seeing her because she was always so pleasant and upbeat.

About a year into our relationship she asked me if I was dating anyone. Many doctors feel it’s inappropriate to discuss their personal life. I’ve never felt that way—except in cases where it would be distracting, embarrassing, or otherwise non-therapeutic. I guess that’s a lot of caveats. But in practice, I’m generally open about my life. I find that sharing personal experiences or facts can help me and the patient relate, and may even help build a sense of trust and camaraderie, which can be helpful in tough times.

I didn’t mind answering Elaine’s question about my dating life. I told her about my boyfriend. Elaine was at first very surprised by the fact that I’m gay. She cautioned me not to tell the other “busybodies” in the neighborhood, out of concern that they might disapprove and leave my practice. This new piece of information about my personal life became a prized secret to her. At each of the next few visits she insisted on asking me “are you gay?” and expressed renewed astonishment at my answer, but also pleasure that she knew a secret. I was happy to see that she could retain some new facts in her memory. I guess it was the perceived lasciviousness of the material that helped her brain hold onto it.

But, sadly, even that juicy memory didn’t last much longer. Within a year of the revelation, she had totally forgotten about my love life. She didn’t ask any questions. In fact, I could tell that she had a hard time recognizing me. She was able to take note of my stethoscope and deduce that I was a doctor. But she didn’t know much more.

Elaine’s home attendant started to take more control over the visits. Although I always began the visit by engaging Elaine in conversation and asking her about her health, I could no longer trust her answers. After our initial conversation I turned to the home attendant to get the full story. The attendant was able to tell me all the problems and help come up with useful solutions.

I find that it’s hard to have a visit with a patient with advanced Alzheimer’s disease. The conversation with the home attendant starts getting much longer than the conversation with the patient. Part of me gets uncomfortable discussing the patient while she’s sitting there in the room. On the one hand, I like the patient to hear everything. I believe that she has a right to know what the objective reality of the situation is. I want her to listen to the plan that’s being formulated for her wellbeing. Even though she probably won’t remember the conversation, I want her to be informed. On the other hand, I wonder how disturbing it is for her to hear about her mental decline and how her behavior is perceived by outside observers.

Recently, she came in for her routine visit. She was hardly communicative. I couldn’t get her to answer any questions. Her smile had faded. The home attendant reported that Elaine was hardly eating. She slept most of the time. We discussed what that meant: Elaine was dying. With Elaine in the room listening, I talked the home attendant through the expected final stages of Elaine’s condition. I figured that she would die in the next few weeks. Again, I felt awkward discussing Elaine’s death in her own presence and not knowing what Elaine could understand. Would the conversation depress her? Scare her? Or give her permission to let go?

About ten days later I got a call from the home attendant. Elaine had died in her sleep. The last days of her life seemed peaceful and calm. I hope that somewhere in her aged mind she was feeling those same emotions.